PRP Advocacy

Editor’s Note Whether you are a newcomer or a seasoned traveler, the more you know about pityriasis rubra pilaris, the better prepared you will be for the journey ahead. The following information has been developed to enlighten PRP patients and their caregivers, family and friends, teachers and school administrators, and employers and co-workers. This information […]

Here’s something that dermatologists are unlikely to share with a newly diagnosed PRP patient: “The combination of topical ointments, cream, and lotions you will be prescribed and the relentless shedding of skin, will put an extraordinary mental and physical strain on you, caregivers, and push your washing machine to its mechanical limits. For many, the

Editor’s Note: This webpage focuses on the PRP Global Database as of January 31, 2020, the PRP-related data we capture, and why the data is important to every member of the PRP global community. Whether you are a patient, loving caregiver (spouse, partner, or parent), an extended family member, friend or a healthcare professional, the

    The EveryLife Foundation has been leading a National Burden of Rare Disease Study with the goal of yielding a powerful tool for patients and organizations to use to advocate for the development of policy, therapies, and diagnostics aimed at reducing the burdens that rare diseases place on patients and their families. We are

The following INDEX provides a quick scroll of over 100 words, terms and jargon currently included in the PRP Patient-Friendly Glossary of Word, Terms & Jargon. You may return to actual PRP Glossary at any time. If you would like to suggest a word, term or jargon NOT currently in the PRP Glossary, please “Leave

From the Editor… The issue of sauna suits resurfaced with an interesting exchange between PRP Facebookers. Makes one wonder: How many dermatologists would prescribe a sauna suit to a PRP patient? Would the cost of the sauna suit be covered by insurance. Worthy of a survey? Jan B – Forest Lake, MN I am being

PRP Awareness Month Begins Today Select LanguageAfrikaansAlbanianAmharicArabicArmenianAzerbaijaniBasqueBelarusianBengaliBosnianBulgarianCatalanCebuanoChichewaChinese (Simplified)Chinese (Traditional)CorsicanCroatianCzechDanishDutchEsperantoEstonianFilipinoFinnishFrenchFrisianGalicianGeorgianGermanGreekGujaratiHaitian CreoleHausaHawaiianHebrewHindiHmongHungarianIcelandicIgboIndonesianIrishItalianJapaneseJavaneseKannadaKazakhKhmerKoreanKurdish (Kurmanji)KyrgyzLaoLatinLatvianLithuanianLuxembourgishMacedonianMalagasyMalayMalayalamMalteseMaoriMarathiMongolianMyanmar (Burmese)NepaliNorwegianPashtoPersianPolishPortuguesePunjabiRomanianRussianSamoanScots GaelicSerbianSesothoShonaSindhiSinhalaSlovakSlovenianSomaliSpanishSundaneseSwahiliSwedishTajikTamilTeluguThaiTurkishUkrainianUrduUzbekVietnameseWelshXhosaYiddishYorubaZulu Powered by Translate November 1, 2017 Every patient organization needs an Awareness Day they can call their own. We celebrate Rare Disease Day on the last day of February and share the spotlight with 7,000 other rare diseases. However, PRP Awareness Month

An Open Label Pilot Trial of Guselkumab (Tremfya) in the Treatment of Adults With Pityriasis Rubra Pilaris (PRP)® Open label is a term used to describe the situation when both the researcher and the participant in a research study know the treatment the participant is receiving. Open-label is the opposite of double-blind when neither the

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From Bill McCue, Editor In 2008, Jonah Grant-Scarfe, a PRP sufferer from Canada, recognized the value of Facebook as a tool with which to share PRP-related insights and experiences with fellow PRP patients. The PRP Facebook Support Group didn’t immediately catch on. In fact, it took five years to reach the 100-member milestone. Facebook provides